Supporters keep up with challenges of CF

On April 4, Nicole Cretella Burke started a Facebook group called OutRUN The Odds to support Liz Shuman, her lifelong friend who has cystic fibrosis.

By April 30, she and Shuman were being filmed for a segment on "The Today Show," which had caught wind of the group. It is expected to air soemtime this month.

According to the Cystic Fibrosis Foundation, CF is a genetic disease that mainly affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs, leading to lung infections, and obstructs the pancreas. There is no cure. The average life expectancy of someone with CF in 2014 is 38. Shuman will turn 38 on Sept. 6.

Burke and Shuman met through Madison Park & Rec Gymnastics about 30 years ago and have stayed friendly ever since.

Burke, now a literacy specialist at East Lyme Middle School, started the Facebook group with the simple goal of doing something nice for Shuman, who was emerging from a long hospital stay. The idea was to have friends log miles they'd run to dedicate to Shuman. Burke figured it would be significant if total posts on the page reached 3,800 miles by Liz's 38th birthday in September.

Instead, they hit that number on April 13 - nine days after the page launched.

PERSONAL STRUGGLES

About a year and a half ago, Burke and her husband, Keith, had recently moved back to the area from Vermont. At the time, Burke says, "I was significantly overweight. I have two small kids, and one day while skiing with my son, I realized, 'Oh my gosh, I'm that mom who's not going to be able to keep up with her kids.' I decided to start packing my food and paying attention."

Since that day on the mountain, Burke has lost 66 pounds. Weight loss aside, Burke's new regimen also reconnected her with Shuman.

"I started working out a little bit, and then one day I saw Liz running on Middle Beach Road (in Madison)."

It had been 17 years since they'd seen one another. The two talked and Burke learned that running helps Shuman to fight her CF symptoms. Last May, while the duo were participating in the Cystic Fibrosis Foundation's annual Great Strides walk in Madison, a man whose daughter has CF asked Shuman when she'd had a lung transplant.

Burke recalls, "She laughed and said, 'I didn't have a lung transplant. I'm just a runner and that keeps me healthy,' and I had this moment of realizing, 'Oh my God - running keeps her alive. She's beating this disease with running.' We got back in stride and I told her how amazing that exchange was. She asked me if I wanted to do a half marathon. I said, 'Of course!'"

OUTRUNNING THE ODDS

Burke notes, "Last summer and fall, I would often run the shoreline and post my thoughts on Facebook, which kept giving me these ideas that I should do something.

"Liz's CF was really bad last year. Meanwhile, I was really getting into running and had started training for a full marathon. One day I ran 13 miles and I thought, 'If I can run 13 now, I can run 26 in a couple of months.' I ran more and she got sicker, and over the course of that time, I had her on my mind, thinking about how I was running because I can and she can't. I worried about how it would make her feel. But when I told her I was training for the marathon, she was my biggest cheerleader. I ran my first marathon in October."

Burke kept running. Six months later, she started the Facebook group that has taken on a life of its own.

"Liz was in the hospital on a Thursday night getting ready to be released, and I was on a run and I thought, 'I bet I could bring people together to run. That would make Liz feel good.' So I was texting Liz's sister and texting some friends asking them to tell me how much they run every week."

They did, and somebody suggested Burke take the query to Facebook. She started an online group called OutRUN The Odds, which now also has a website (www.outrun38.org) and goes by the name OutRUN 38.

"I invited people I knew who ran, and 12 hours later we had 1,000 people. That weekend we hit 1,000 miles. ... Less than a month into it we had run 27,000 miles. So my new challenge for the group for May, which is Cystic Fibrosis Awareness Month, is to run 38,000 miles in one month. We're not stopping; we're just going to keep going."

The group has more than 3,000 members from six countries. They log their miles from not just running, but also walking, biking, kayaking - any activity that promotes fitness.

"Very early on, we wondered, 'What is it about this that's so interesting to people?'" Burke comments. "It is about cystic fibrosis, but it's about friendship. I think that's what makes people get really into it. It was one small thing that makes a huge difference, and I think people are pretty hungry to get into something.

"We're open to whatever this becomes," Burke adds. "This whole thing has been so organic that we want to keep going with that. There's a possibility that this could be OutRUN 38 for other orphan diseases, not just CF."

OutRUN The Odds will host a 5k on Aug. 2 in Madison. For more information, visit www.outrun38.org, www.cff.org, or search for OutRUN The Odds on Facebook.